Small But Mighty: A Thyroid Life

SOME time ago I created a survey titled: Thyroid Awareness: Who ought to know and who ought not to know'. I placed a link on this blog and sent it out through Facebook and through various other forums. There are so far 25 completed responses to the survey, which can be found here.

60% of all respondents are based in the UK; 32% in the US, and 8% elsewhere (Brunei and New Zealand).

4 people did not complete the survey.

80% of all respondents so far are female.
Of those who answered the occupation question, there was a huge variety, with the majority being students of A Levels (probably my friends) and a higher amount selecting the 'other' option. Of those who answered the qualification question, 42% hold a first aid qualification and 26% a GCSE in Biology or full science.

84% answered 'Yes' to having heard of thyroid disease before visiting the survey, however it should be noted that 40% also answered that they 'have thyroid disease or have had some questioning of my thyroid'; 20% said that they have a family member with the disease, and 16% said that they have a friend with the disease. Those who have the disease themselves or have a family member with it showed quite extensive knowledge of thyroid disease - many symptoms were listed and there was some explanation of medications - however all of this information comes from a person's own experiences or their own research. Those who didn't have the disease themselves quite clearly knew some basics, but there was some variation on what 'basics' were:
tiredness
weight gain/loss
reduced height
All of the above were mentioned but there were a couple of people who did not explain what they did know about the disease.

What is good is that of those who did explain what they knew about the disease, no one gave incorrect information - it is just clear that people don't know how many symptoms are connected with the disease and what those are.

Almost an equal amount answered: 'I tell people about thyroid disease so that they can know too' (39%) and 'My knowledge of thyroid disease does not affect me in any way.'

These are interesting results, however I would be keen to get a different audience to answer - to place this survey more in the public field where people are equally likely to know or not know about thyroid disease (at the moment it is being answered mostly by thyroid disease readers).

Look out for more on this in the coming months.

MANY months ago I came across a popular website known as Dear Thyroid. You'll see a link to this site at the side of my blog. The website invites any one, of any age, to write a letter to their thyroid or to their friend's or family member's thyroid. Most of the letters are highly outspoken and often very funny.

Originally I thought that this was a very cool idea which I had little interest in participating in - it seemed quite a weird thing to do, and a little far from the sort of posts which I write on here.

The next thing I knew I was halfway through writing my first Dear Thyroid letter: 'Superman & Co. Run Wild In Airspace...Oh wait, I forgot, That's Too Original!' I sent that letter in a few months ago and just last week it was published on the website.

Click here to read it.

IT has been a while since my last post and today I am going controversial. 
Very controversial.
I believe that I have hit the nail on the head and have found a core reason for the lack of awareness of thyroid disease within the medical community itself. I believe that this is reason number 14, the giant, laughable but true reason to add to '13 Reasons for a Poppycock State of Awareness.' Why is it that there are umpteen posters in a GP's surgery, all raising awareness of various conditions - yet not one (and least not one that I have seen) is about thyroid disease or thyroid cancer? Why is it that the conditions seem to be spoken about behind doors, or under breaths - never out loud, to a community that doesn't have the disease; never where people will hear it?

Today I found out that we thyroid sufferers are only supposed to have a blood test once a year (I'm guessing this is true for when we are euthyroid - 'normal.') Forget every three or every six months - once a year. 

It shows how much of a burden hypothyroids are on the NHS.

And that is it: reason number 14 (unless we're already in the 20's?): we cost the NHS, the government, too much money. That's what it boils down to in the end - the crude turning point of life - money. The real truth is that we are expensive: we get free medication which we require for our entire lives; it takes us ages to become euthyroid and that means many, many blood tests beforehand; most of us have other conditions or medical 'problems' possibly related to our thyroids - and that means more tests (which we pull out of our insurance providers pockets) and more medications (which we also get for free on the NHS); and, last but not least, we are all damn loud moaners, always asking questions and using up the online space (and Google's search results!) We cost the NHS, the government, too much money. Therefore, to them, it is better that the word 'thyroid' and everything surrounding that word - disease; cancer; hypo; hyper; free medication - is all kept quiet. It is better, therefore, that people didn't know about the location or purpose of their thyroids because that way they cannot ask about it. It is better that the many millions undiagnosed weren't diagnosed because then the government will suffer. It is better that research wasn't done (and let's face it most people are at a loss of just what to do) on the thyroid because published results will cause people to ask questions. There are in fact hundreds of clinical trials related to the thyroid being conducted...only 5 of which are located in the UK. (Source to follow.) The more people diagnosed with thyroid disease, the more funding the NHS has to pump out. We cost too much money. It's ridiculous, isn't it?

What's even more ridiculous is that we aren't the only condition on the list of prescription charge exempts - to name one diabetes is on the list - something everyone who's been to school knows about; something for which there are awareness campaigns everywhere. But of course, diabetes can be life threatening; thyroid disease rarely is (although that's not to say it can't be). Still, let us just for one minute consider just how ridiculous a once-a-year checkup allowance on the NHS is:


Say a patient isn't feeling well. They, like me, have been on levothyroxine for a year and a half and believe that they are getting to know really quite well the ways of their thyroid and the interactions between their body, their medication, their thyroid and their brain. They've kept an eye on recurring symptoms for some time and have attempted to exclude other options, but they had their last blood test only a few months ago. Now they request a new one off the NHS, only to hear that they cannot have one - not, at least, without booking an appointment first. For the sake of a blood test? And you wonder why the NHS is stretched for time! Still, precautions are always good, of course - but the point still remains, does it not? That a yearly checkup for someone who knows their body quite well and believes that their thyroid is going down, is not particularly helpful. Say the doctor advised the patient, even after an appointment to not have a blood test? Then what? What if this patient doesn't see a doctor privately and so only has the NHS to watch over them?

A whole year of gradual decreasing thyroid can seriously impact a person's life. When my thyroid is down my memory is poor - when I look back I remember less of an event than I would if my thyroid were normal. Concentration; energy; motivation; the want to participate socially; digestion; weight; exercise; concentration; .. you name it, it affects it. And finally being told, up to a year later than you would've been, is not helpful: it can take up to six months to recover from an underactive thyroid. The lower your thyroid at the point of upping medication or receiving medication, the longer it will take for you to recover. Sometimes I wish I never did get that euthyroid test - if I didn't I would be entitled to checkup blood tests, and the insurance would pay for appointments. Instead, I don't book unless I absolutely have to - which sometimes is not good enough, and can be a mistake to regret.

Money should not be a reason to decide when a person is entitled to checkups. The NHS, affordable health care, surely has that aim under them?


Note: Few posts in this blog are based on a personal point of view and where they are, it is always made obvious. This post is based on opinion - don't take my word as fact!

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